Ongoing Immune Reaction - Shingles

[maryb]

I have had private testing over the 10 yrs I've been sick. Each year I've tested for at least one active virus at times when I was really ill. So I know when I have the same symptoms its a virus (plus other infections) causing it. Last year on testing I had 4 active herpes viruses.
I suggested Famvir as an alternative to Acyclovir to someone already diagnosed with shingles, its something that can be asked for on prescription if someone has shingles....will they get it in the UK on the NHS, I haven't a clue, probably not, but the point is we no longer have to be unaware of what's available to treat medical conditions. I would get as much info on chronic shingles and antivirals as I could and present it to the doctor if that was the route I wanted to go down.
Most of the people on here have been sick for many years without any help. I search and search the internet, join groups, look for people more informed than me....just like many do. I maybe take it for granted that others do the same and that's where the only problem is that I can see....

As for the research on ME and shingles, well for me is it such a leap from some of the top ME doctors linking EBV (another herpes virus) to ME and shingles and ME...no.

BTB - my best friend was so upset when she was told she was being taken off a cancer trial drug by the hospital, she got shingles the next day. 3 months ago my brother got shingles the day after being told his wife had terminal pancreatic cancer.

Anecdotal of course - to my simple mind - stress puts strain on the immune system so the latent viruses can re-activate. Same with bacterial infections, keep the immune system busy and the viruses flourish too.
Its never just viruses, the body can cope with those on its own, something else has to be overwhelming the immune system, but keeping the viruses down by using antivirals/supplements means that the immune system can work better.

 

[Jonathan Edwards]

My previously active partner, Elle, was first diagnosed with shingles, by 2 different medical professionals, in April 2014 (rash accompanied by feeling terrible and terribly exhausted); she’s never fully recovered. At the 5th rash outbreak in May 2015 our doctor said it couldn't be shingles as it was too widespread on the body, so stopped prescribing shingles anti-virals - and the rashes became more frequent, of longer duration and more widespread. She arguably had 13 different outbreaks of rash in 17 months - none in the last 3.

We've found the more information we can give doctors, the more options they come up with. We have photos of every rash there's been, with dates, & documentation of every test that's been done, with results. We'd recommend taking photos - if there's a rash & at any point anyone suggests its not shingles, what is it? Our doctor referred Elle to a dermatologist who plans to biopsy the next rash that appears.

This is what I was pointing to. This does not sound like shingles, which affects individual nerve territories. I have misdiagnosed rashes as shingles on several occasions in the past. There are several other rashes that can look similar. Before thinking about suggesting treatments it is good to get the right diagnosis.

Please let’s swap information and experience. Everyone here understands that most other posters are not medical professionals. Many of us, perhaps especially those in the UK, are ill or concerned for someone who is, but find medical professionals can offer little or no help. If something concerns or helps someone else, I want to read about it. Discussion and the telling of individual stories is vital when so little else is on offer - and of course also so that posters can be made aware through informed responses (as in this thread) if their experience may have a cause that is not cfs-related and maybe should be flagged (again) to medical professionals.

I absolutely agree. Nobody is suggesting stopping swapping experiences and information.

 

[Jonathan Edwards]

JE:But I personally do not think that should extend to making suggestions about taking prescription drugs to people you have never met who may obtain such drugs for a family member who may in fact be suffering from a problem that needs a quite different form of treatment.
No one is doing this.


Crux:No one is doing this.

The reason I made the comment is that MaryB suggested Famvir - so yes people are doing it.

As things stand this may not be considered a rule breach by the moderators. That is up to them and I do not interfere. The point I was making is different. I personally do not feel that I should be on the board of directors if the PR membership as a whole feel that this sort of suggestion is acceptable. This is purely an issue for me in a sense but it reflects my view on the ethical status of the site. If comments like this are considered OK then I must bow out of the board, although I may continue to be a member.

I think some people are being unreasonable about my comments about regulatory authorities. I mention that simply because it is a reality that the board of directors have legal responsibilities about content and if content goes outside a certain range then regulatory authorities would be entitled to close us down. I do not see that as likely but I think we are reasonably close to the borderline. Laws about providing medical advice are there for a reason.

I have never suggested that I would shut down PR or recommend to anyone that it was shut down. There would be no need for a whistleblower since there are already people who are well aware of what is posted here who would clearly rather that PR did not exist. People even write newspaper articles about us. I think it is fair to assume that we are acting within what would be considered reasonable. 99% of stuff on PR is good value and unproblematic. However, in this sort of instance I think there is a risk of harm through not knowing the full story. I have to be particularly careful because I have sworn to the Hippocratic oath and just because I am retired does not make me think I should pretend I haven't.

So all I am saying is that I think suggestions about anti-virals and similar prescription medicines made to people we do not know risk harm. And if the consensus is that they are acceptable on PR then I should not be a member of the board of directors. If that is what people want I have no problem, since this is your site. I am deliberately discussing this first hand on an open thread rather than with the moderator team because I do not want people to think things are going on behind their backs.

 

[brenda]

I think that there is some confusion about what people mean, and what people understand by suggesting medications.

I believe what is meant by the suggestion is, that perhaps you could look into this, rather than, l think you should order it and take it.

Looking into it means doing research to see if it is a possible help, and includes discussing it with a physician.

I have never understood a suggestion as being advice to take it. We have all, or mainly most, enough sense to know this. I think it is a bit demeaning to suggest that anyone would take it as a prescription.

 

[maryb]

Thank you Brenda, that is what I meant by my post, but I've deleted it anyway ......

 

[PeeWee]

@Jonathan Edwards 'There are several other rashes that can look similar' - please could you clarify what these are so that those of us dealing with rashes of this sort, which (in my partner's case) appear with significant pain & worsening of exhaustion, can research them and discuss them with our doctors if appropriate.

 

[Jonathan Edwards]

@Jonathan Edwards 'There are several other rashes that can look similar' - please could you clarify what these are so that those of us dealing with rashes of this sort, which (in my partner's case) appear with significant pain & worsening of exhaustion, can research them and discuss them with our doctors if appropriate.

I am not a dermatologist. All I know is that for any rash I know about my dermatological friends can name another nine rashes that are similar. And that includes shingles. Dermatological diagnosis is an expertise you can only really get from sitting in dermatology clinics for years. I gave up trying to diagnose more than a few very common rashes years ago.

 

[Jonathan Edwards]

I think that there is some confusion about what people mean, and what people understand by suggesting medications.

I believe what is meant by the suggestion is, that perhaps you could look into this, rather than, l think you should order it and take it.

Looking into it means doing research to see if it is a possible help, and includes discussing it with a physician.

I have never understood a suggestion as being advice to take it. We have all, or mainly most, enough sense to know this. I think it is a bit demeaning to suggest that anyone would take it as a prescription.

I don't think there is really any confusion here. I understood what MaryB meant - which is what you said she meant and she agreed. But I don't buy the idea that such suggestions are going to have the intended effect. And MaryB did not suggest discussing with a physician - I think she said maybe get some Famvir and then ask Dr M to re prescribe. Lots of members talk about ways of getting prescription drugs online so the discussion with a physician is not explicit.

You say that 'or mainly most' have enough sense to know not to take a suggestion as advice. But that means there may be some people who do and that is enough for me to worry. I am also unclear how a suggestion can be other than advice. At the moment the rules are that members should not 'insist' that others take treatments. But from my perspective advice can be just as damaging if it is only a suggestion and it is followed. Nobody is suggesting that suggestions are taken as prescriptions, merely that they may be acted on in the wrong circumstances because not enough information about the case or medical knowledge is available. Nobody is being demeaning in that way.

I agree that it may seem condescending to suggest that members will act on suggestions irrationally or without due care. But time after time members express their despair at continuing to be ill and say that they are prepared to try anything, however weird, if there is a chance it might work. That makes it pretty clear that members can be expected to act irrationally or without gathering enough evidence. Having looked after people in the clinic and had to deal with medical problems in my own family it is clear to me that human nature just isn't that sensible. We are not unemotional Vulcans like Mr Spock. To act rationally when one is seriously ill is superhuman. When I had prostate cancer i did not decide rationally. My wife had to overrule me and get myself cured. My brother in law was not so lucky.

In other words members cannot argue both ways - that they are quite capable of making sensible decisions and that at the same time they are so desperate they will go for anything. And that is the way we all are - not quite as rational as René Descartes would have us. Helping other people has to take that into account I think.

 

[PeeWee]

It appears that the people on this forum who report multiple / recurrent episodes of shingles could be being misdiagnosed and should be requesting referral to a dermatologist (along with treatment for or referral elsewhere for other accompanying symptoms).

Recognition of the fact that there are a number of people on this forum who report multiple / recurrent episodes of shingles might be a step towards investigation of this. If those affected request referral to a dermatologist then the results, posted on this forum, also might add some information helpful to others.

Has anyone had a dermatologist referral for a recurrent rash originally diagnosed as shingles, & if so, what was the dermatologist’s diagnosis?

 

[Jonathan Edwards]

Recognition of the fact that there are a number of people on this forum who report multiple / recurrent episodes of shingles might be a step towards investigation of this. If those affected request referral to a dermatologist then the results, posted on this forum, also might add some information helpful to others.

I agree. It is good to get something positive out of discussions like this. I would dearly love to know if shingles really is more common in ME. Then I would have a huge amount more leverage in persuading colleagues to do more research. It would be unequivocal evidence of immune dysfunction.

 

[user9876]

Maybe, but that was your decision for you. I don't think on PR we should be making suggestions for desperate members to apply to their wives when the story does not fit with ME and there are a hundred and one other pieces of clinical information we do not know.

This is an issue which is open to debate but my own feeling is that PR has a duty of care to make sure it does not encourage vulnerable people to make decisions about relatives that might cost their lives, either in terms of adverse reactions or missed diagnosis. There may be another diagnosis that needs to be made quickly.

I think sometimes people with symptoms not fitting with ME need advise of how to approach a doctor and be taken seriously. There can be a big problem in getting many doctors to see past an ME (or probably as CFS) diagnosis and looking at other symptoms. Having said that I don't thing I have any hints or tips that have worked. I think underlying this is if there is another diagnosis that needs to be made quickly how do you get that done?

 

[brenda]

@Jonathan Edwards

With respect, we are not in general, dealing here with people who normally have reasonable health and are in a bit of shock over a medical crisis and liable to act irrationally. Yes of course we have newbies coming along looking for advice and they are invariably told to find an ME friendly physician.

But the fact us that many of us do not have access to such nor the money to spare.

If we had a physician to consult with who had a grasp of the illness then we would do that. We have to do it alone most often, even if we do have access to a good physician, our condition and sensitivities make us unique. I was granted funding to see one of the top ME specialists in the UK and found that my sensitivities were grossly underestimated when it came to prescribing a boatload of supplements, most of which were wasted.

So although many are desperate and as you say would try anything, that would be after taking great care over research and as a last resort, to ordering online medications and starting at a very low dose. This is the advice given.

I haven't seen any evidence of what you are suggesting is that people are taking self prescribed medications and becoming damaged by them. However, l see lots of evidence that physicians are damaging people with their prescriptions.

I appreciate the sense of responsibility you have, but l think you are over reacting.

 

[Aurator]

@Jonathan Edwards
I appreciate the sense of responsibility you have, but l think you are over reacting.

I think his reaction is exactly the one any good doctor would make under the circumstances, Brenda.
I'd have been disappointed if he'd reacted any other way.

 

[Jenny]

Isn't it quite straightforward? If you've found something that helps a particular symptom, say something like 'I also have ..... (sleep problems, or whatever) and I find (zopiclone, or whatever) helpful'.

Or is that not acceptable?

 

[PeeWee]

There is no question that Elle's ‘shingles’ rashes arrive concurrently with her illness and exhaustion significantly increasing. She wonders if an initial attack of shingles could have mutated, or could have reduced her body’s ability to fight something else that looks similar but is not shingles.

We’d appreciate any perspectives on this from anyone with dermatological expertise, or anyone with a similar experience of recurrent rashes coinciding with increased illness and exhaustion.

 

[heapsreal]

It appears that the people on this forum who report multiple / recurrent episodes of shingles could be being misdiagnosed and should be requesting referral to a dermatologist (along with treatment for or referral elsewhere for other accompanying symptoms).

Recognition of the fact that there are a number of people on this forum who report multiple / recurrent episodes of shingles might be a step towards investigation of this. If those affected request referral to a dermatologist then the results, posted on this forum, also might add some information helpful to others.

Has anyone had a dermatologist referral for a recurrent rash originally diagnosed as shingles, & if so, what was the dermatologist’s diagnosis?

Dermatologist will more than likely diagnose folliculitis or dermitis and get a prescription for some type of cortisol cream to reduce the symptoms. They wont do viral titres. Rashes are commonly associated with viruses but as with most drs, little understanding of cfsme and how we can have problems getting rid of viruses .

Its not a problem for them as they will just refer you back to your gp and say they cant do any more for you.

Might be worth a biopsy but probably come back as folliculitis or dermatitis .

 

[Jonathan Edwards]

Isn't it quite straightforward? If you've found something that helps a particular symptom, say something like 'I also have ..... (sleep problems, or whatever) and I find (zopiclone, or whatever) helpful'.

Or is that not acceptable?

I don't know the answer to this but I am not sure it is quite so straightforward. Would you have mentioned the adverse effects listed in the drug information sheet?

I have only once tried a drug of the zopiclone class (z-drugs), which was zolpidem. I had such severe dysphoria (feeling terrified, disorientated and unable to control my thoughts) that I was sure I was having a stroke. Fortunately, a doctor neighbour came round and said he had had exactly the same problem and I managed to calm down without going to accident and emergency.

I guess none of it would be a problem if all prescribed drugs were only available through a physician - so getting them would entail advice from the physician and checking the diagnosis (the sleep problem might be due to an endocrine tumour perhaps). And it is interesting that zopiclone is a banned substance in several countries - presumably for a reason. A lot of people could only get it through illegal online routes (I think it is illegal to possess it in some places).

It ought to be straightforward, but the problem is that none of us necessarily knows when it isn't.

 

[Jenny]

I don't know the answer to this but I am not sure it is quite so straightforward. Would you have mentioned the adverse effects listed in the drug information sheet?

I have only once tried a drug of the zopiclone class (z-drugs), which was zolpidem. I had such severe dysphoria (feeling terrified, disorientated and unable to control my thoughts) that I was sure I was having a stroke. Fortunately, a doctor neighbour came round and said he had had exactly the same problem and I managed to calm down without going to accident and emergency.

I guess none of it would be a problem if all prescribed drugs were only available through a physician - so getting them would entail advice from the physician and checking the diagnosis (the sleep problem might be due to an endocrine tumour perhaps). And it is interesting that zopiclone is a banned substance in several countries - presumably for a reason. A lot of people could only get it through illegal online routes (I think it is illegal to possess it in some places).

It ought to be straightforward, but the problem is that none of us necessarily knows when it isn't.

No I wouldn't have mentioned the adverse effects, and the GP who prescribed it for me didn't either. He probably expected me to read the drug information sheet and find out for myself, which quite reasonable, and which I did.

But zopiclone is just an example.

If we should not simply write about our own experiences with particular medications without going into all the possible adverse effects, we've got a problem on this board. Hundreds of messages would have to be deleted. And there are sites that exist just for this purpose, for example Patients Like Me. Apparently they don't have a problem.

 

[waiting]

@potbatch,

As other members have mentioned in this thread (I just wanted to highlight it), when you see an immunologist, documentation is important.

Bring along a record of your wife's temperature readings -- at different times of the day -- over a week at least.

Highlight the high temperature readings & make sure she very simply tells the specialist that this is a NEW symptom, as of whatever date it started.

You could also include some comments about what activity she was doing at the time (or before).

 

[minkeygirl]

I walked into my immunologist appointment armed with 2 years of labs with proof of an immune disorder. Numbers don't lie, but he would not treat me until I had a psych eval. Would he have asked someone with MS or RA to do this? I doubt it.